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Ethical Considerations in the Use of Video Observations in Dementia End-of-Life Care Research

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Ethics and Visual Research Methods

Abstract

This chapter offers an account of the ethical issues arising from the use of video in a research project investigating the experiences of people with advanced dementia who resided in nursing home environments. While the use of video enabled the researchers to gather evocative and contextualized data, respecting research participants as well as others who might live and work in the nursing home space required careful consideration of both procedural and emergent ethical issues. We take a reflexive approach to unpack issues of consent, considerations of privacy for all individuals who work and reside in the nursing home, and the complexities of representation and sharing of video footage.

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References

  • Beck, Cornelius, Kathy Richards, Corinne Lambert, Rebecca Doan, Reid D. Landes, Ann Whall, Donna Algase, Ann Kalanowski, and Zachary Feldman. 2011. Factors associated with problematic vocalizations in nursing home residents with dementia. Gerontologist 51(6): 389–405. doi:10.1093/geront/gnq129.

    Article  Google Scholar 

  • Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada. 2014. Tri-council policy statement: Ethical conduct for research involving humans.

    Google Scholar 

  • Casey, Edward S. 1993. Getting Back into Place: Toward a Renewed Understanding of the Place-world. Bloomington: Indiana University Press.

    Google Scholar 

  • Cook, Ailsa. 2002. Using video observation to include the experiences of people with dementia in research. In The Perspectives of People with Dementia: Research Methods and Motivations, ed. Heather Wilkinson, 209–222. London: Jessica Kingsley Publishers.

    Google Scholar 

  • Cox, Susan, M. Sarah Drew, Marilys Guillemin, Catherine Howell, Deborah Warr, and Jenny Waycott. 2014. Guidelines for Ethical Visual Research Methods. Melbourne: University of Melbourne.

    Google Scholar 

  • Dassa, Ayelet, and Dorit Amir. 2014. The role of singing familiar songs in encouraging conversations among people with middle to late stage Alzheimer’s disease. Journal of Music Therapy 51(2): 131–153. doi:10.1093/jmt/thu007.

    Article  Google Scholar 

  • Dewing, Jan. 2007. Participatory research: A method for process consent with persons who have dementia. Dementia 6(1): 11–25. doi:10.1177/1471301207075625.

    Article  Google Scholar 

  • Engström, Gabriella, and Lena M. Hammar. 2012. Humming as a potential tool for facilitating feeding situations between persons with dementia and their caregiver: A single case study. Music and Medicine 4: 231–236. doi:10.1177/1943862112456042.

    Article  Google Scholar 

  • Hammar, Lena M., Azita Emami, Gabriella Engström, and Eva Götell. 2011. Communicating through caregiver signing during morning care situations in dementia care. Scandinavian Journal of Caring Sciences 25(1): 160–168. doi:10.1111/j.1471-6712.2010.00806.x.

    Article  Google Scholar 

  • Hauge, Sloveig, and Kristin Heggen. 2008. The nursing home as a home: A field study of residents’ daily life in the common living rooms. Journal of Clinical Nursing 17(4): 460–467. doi:10.1111/j.1365-2702.2007.02031.

    Google Scholar 

  • Husebo, Bettina Sandgathe, Liv Inger Strand, Rolf Moe-Nilssen, Stein Borge Husebo, Andrea Lynn Snow, and Ann Elizabeth Ljunggren. 2007. Mobilization-Observation-Behavior-Intensity-Dementia pain scale (MOBID): Development and validation of a nurse-administered pain assessment tool for use in dementia. Journal of Pain and Symptom Management 34(1): 67–80. doi:10.1016/j.jpainsymman.2006.10.016.

    Article  Google Scholar 

  • Pink, Sarah. 2013. Doing Visual Ethnography: Images, Media and Representation in Research, 3rd edn. London: Sage.

    Google Scholar 

  • Sherratt, Chris, Tony Soteriou, and Simon Evans. 2007. Ethical issues in social research involving people with dementia. Dementia 6(4): 463–479. doi:10.1177/1471301207084365.

    Article  Google Scholar 

  • Skovdahl, Kirsti, Annica L. Kihlgren, and Mona Kihlgren. 2003. Dementia and aggressiveness: Video recorded morning care from different care units. Journal of Clinical Nursing 12(6): 888–898. doi:10.1046/j.1365-2702.2003.00809.x.

    Article  Google Scholar 

  • Swall, Anna, Britt Ebbeskog, Carina Lundh Hagelin, and Ingegerd Fagerberg. 2015. Can therapy dogs evoke awareness of one’s past and present life in persons with Alzheimer’s disease? International Journal of Older People Nursing 10: 84–93. doi:10.1111/opn.12053.

    Article  Google Scholar 

  • van Weert, Julia C.C., Alexandra M. van Dulmen, Peter M.M. Spreeuwenberg, Miel W. Ribbe, and Jozien M. Bensing. 2005. Effects of snoezelen, intergrated in 24h dementia care on nurse-patient communication during morning care. Patient Education and Counseling 58: 312–326. doi:10.1016/j.pec.2004.07.013.

    Article  Google Scholar 

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Puurveen, G., Phinney, A., Cox, S., Purves, B. (2016). Ethical Considerations in the Use of Video Observations in Dementia End-of-Life Care Research. In: Warr, D., Guillemin, M., Cox, S., Waycott, J. (eds) Ethics and Visual Research Methods. Palgrave Macmillan, New York. https://doi.org/10.1057/978-1-137-54305-9_8

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